When I was 20 weeks pregnant, my doctor recommended an amniocentesis so we could find out what was causing concerns during my pregnancy. They took amniotic fluid for testing, and that's when my husband and I learned our daughter had a rare genetic disorder called Fanconi anemia (FA). We found out that we were both carriers, something we had never known.
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Aileen Carlos
Board Member | JD
Aileen is a lawyer based in Portland, Ore. She was introduced to Fanconi anemia while attending law school with Jon Frohnmayer and taking classes from Dave Frohnmayer. She has worked in the legal nonprofit and education sector, and continues to support nonprofits with her legal and dispute resolution experience. Aileen grew up in Pittsburgh, Penn., and continues to be an avid Pittsburgh sports fan despite her distance. She and her partner recently bought their first home, with a fenced in yard that their dog adores. Aileen enjoys hiking and photography, and volunteers for several nonprofits in her free time.
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The Family Retreat offers families a break from appointments, treatment decisions and everyday responsibilities. Children can try new activities and grow in confidence while caregivers learn, share practical support and connect with one another. The relationships formed at camp often continue long after everyone goes home.
By Cecilia Córdoba, mother of Agustina Milagros Kaucic When my daughter Agustina was 2 and a half years old, our lives changed forever. It was very difficult to reach a diagnosis. And when we finally received it, it was devastating....